Wednesday, August 22, 2012

Update on my Graves Disease (and Gluten Intolerance)



Last year, I posted a blog about gluten intolerance, and my Graves’ disease. Believe it or not, that blog post has been my most viewed blog post of all time. It shocked me at first but then it started to make sense. Let me ask you? Do you have a thyroid disease? If you don’t, I guarantee you know someone who does! Shouldn’t that be shocking?! Why is nobody talking about the increase in thyroid issues? I have found that when I mention to…well anyone… that I have Graves’ disease, their typical response  is, “Oh my [insert mother, father, uncle, aunt, brother, sister, friend, etc] has Graves’ disease [or Hashimoto’s]”.  Why is that? Why are there so many people with these diseases? Honestly, I am not sure. 

I would venture to assume a lot of these diseases are a result of gluten intolerance, but I am not completely sure. I would also love to blame it on vaccines, but again, I am not sure. The biggest problem I face as a person with Graves’ disease is dealing with endocrinologists. Endocrinologists just seem to still be in the dark. They refuse to recognize the impact that gluten intolerance can have on your thyroid. Oh, and when I say “gluten intolerance”, I mean “gluten intolerance”, NOT Celiac. If you are Celiac, you are gluten intolerant; if you are gluten intolerant, it doesn’t mean you are Celiac! A Celiac’s gluten intolerance affects the intestines. However, many natural doctors are discovering that gluten intolerance can affect other things not just the intestines. For me, my gluten intolerance affects my thyroid. Gluten makes my body produce antibodies (to fight it) but instead of fighting gluten, they fight my thyroid causing it to over produce (people with Hashimoto’s have antibodies that attack their thyroid and cause it to under produce). I find that endocrinologists don’t believe you are gluten intolerant unless you pop positive on a BLOOD test for Celiac. Problem is, even some Celiacs don’t pop positive on the blood test. Even more so, most gluten intolerant people will not pop positive on a blood test. However, they continue to push this on you. They refuse to believe that gluten intolerance can cause other auto immune disorders because there has been no “empirical data” or whatever. Well, I can go online and find stories of hundreds of people that went gluten free and then “bam” no more thyroid issues. Online resources are really helping patients to take health into their own hands. I wish the doctors would be more “curious” these days instead of just waiting for “empirical data” blah blah. 

Anyway, enough of my gripe session, let’s get on to what has actually been happening with my health. From July to September/October of 2011, my thyroid numbers got worse (which I mentioned in my previous blog entry). In October, I went gluten free. Then, I got tested again in December. In December, my numbers went down…not much… but slightly. This was great! Of course, the endocrinologist said my “condition had remained the same”. He refused to recognize the fact that instead of going up, like my numbers did between July and October, they actually went down slightly (within two months)! He decided to put me on Methimazole (an anti-thyroid medication). Despite the fact that I really didn’t want to go on medication, I figured I would give it a shot. Maybe the medication + gluten free lifestyle would help my numbers go down faster. Anyway, I was on it for 2 weeks and then stopped because I got sick from something else and I was unsure if it was the medication or not (I now know it wasn’t the medication). Anyway, so I was on Methimazole for two weeks, and then I was off of it for two weeks. Then I went to a different endocrinologist in January. He tested me, and my numbers had dropped about 10%. This got me excited! That was a pretty decent drop. Now, I didn’t know if it was the medicine or the gluten free lifestyle, but I figured I might as well do both. So, I got back on the medication, and didn’t have any problems the second time around. 

So, then, I was tested in February (numbers went down again), and March (numbers went down again). In March, my numbers were extremely close to being “in the range” however, my TSH levels were still undetectable (TSH is low with Graves’ disease and high with Hashimoto’s). The endocrinologist said that he would see me in June (3 months) and at that point we would probably half my dosage of medication. He also mentioned that sometimes you have to push the thyroid hormone (T3 and T4) to below the normal range (hypothyroid range) for the TSH to come back up. 

Well starting on May 31st, the clinic where my endocrinologist worked (Sadler clinic) went bankrupt and all the doctors had to find new practices etc. This caused a bit of a problem for me since my appt was in June. There was no way of even getting in contact with my endocrinologist. Also, around the first week in June I was starting to feel VERY tired… and my hair was starting to fall out a bit. I had had enough! My timeline feels like this, “get diagnosed with Graves’ disease when I feel perfectly normal”, “get put on medication to get my numbers in line”, “hair starts falling out and I feel like crap”! I decided to take matters into my own hands. I went to an online website where you can order your own blood tests without insurance. I knew EXACTLY what blood test I needed (since I had had like 5 of them at that point). I ordered it for about $150 and went to the lab. I got my blood results the next day online!!! (It couldn’t have been any more convenient).  

Guess what! My thyroid levels were as I expected… LOW. Oh goodness, they were almost out of the range on the low side! This result supported my “feeling tired and hair falling out”. I was practically hypothyroid. The good news was… my TSH had come back on the board. My TSH was back up which was great! Now, it was time to self-prescribe. I looked up online that the Methimazole pills could be cut in half to reduce the dosage (some prescriptions cannot be cut because they are time released). So I decided to reduce my dosage from 10mg to 5mg. I knew that was what the doctor was going to do anyway… so why not? Should I have done this? Maybe not… but I was not going to lose any more hair. Since my doctor dropped off the face of the planet, and I couldn’t get another doctor to see me until July 2nd...I figured why not?!

I just recently went to see the new doctor (on July 2nd). She is pretty nice. She said she was going to give me another blood test in 6 weeks (since the blood test I did was only two weeks prior to my appt, it wouldn’t make sense to test again). However, after looking at my results she said I did the right thing. She would have told me to cut my pills in half as well. HA! So there you go… thanks to the internet… I probably saved myself another 2 weeks of hair loss. Well, I won’t say that EXACTLY. I am still losing hair… but it isn’t quite as bad.

At my most recent appt I got even better result. My numbers were even better! Therefore, the endocrinologist said that I needed to take a half pill every other day! Now, this endocrinologist has told me that the next step is to get off the medication and monitor the situation. She told me (which I already knew based on my own research) that Graves’ disease can come back after being on the meds. It doesn’t always, but sometimes it does. She basically warned me that if it does come back she is going to want to do a more permanent solution (which of course I will fight). However, on the good news side… she was very impressed with how quickly my body reacted to the medication. Most people have to be on the meds for around 1-2 years… so 8 months... is awesome. She also said that people who react quickly to the medication have less likely a chance of reoccurrence. So far so good! 

That is basically where it all stands right now. Hopefully I will have more for you in October… 

Thursday, August 2, 2012

Breaking the Bondage of Social Media... Take on the Challenge!


I have been thinking about writing this blog entry for a while now. Has anyone noticed the increase in social media lately (and lately I mean the last couple of years)? I know I have. I know that I totally vowed NEVER to get a Twitter account. But guess what, I just got one. Why did I get one? Well, for a few reasons. I got one because I wanted one for my business Lindsey Portugal Photography. I also wanted to have a way to get special offers and deals that are only available via Twitter. A few weeks ago when I was at this Photography conference, the speaker asked for people to “tweet” their questions. Well… I didn’t have twitter, so I couldn’t tweet my questions. My only other option was to wait in a long line during the breaks if I had a question. That is when I decided I needed to get one. 
Anyway, there is a bit of a problem with social media though. I find that sometimes, it “increases” our social media friends, but it also “decreases” our true friends. Now don’t get me wrong, I am all over social media. You can find me on Facebook, Blogger (clearly!), Twitter, Polyvore, Pinterest, etc (I don’t have Instagram because my phone’s camera isn’t even worth it!). However, I have found that many times, I don’t actually get together with these “friends”. I don’t see them face to face very often if ever. It seems that keeping up with each other on Facebook, Blogs, etc is enough. But is it really enough? 

Recently, most of you probably know that my Uncle died. This was a very sad thing for my family, and all of my family found out via the phone or in person (which is how it should be, especially for family). Then 99% of my friends found out about his passing via Facebook and Blogger. Although, I am grateful for all of the sweet responses that my friends provided on Facebook regarding this tragedy, not one friend called me. I don’t know if this is because they didn’t feel comfortable calling or what. But I am not blaming anyone either. This just doesn’t seem to be a popular thing in this social media generation. I don’t call people either who announce bad news or even good news on Facebook. Heck, I don’t even call for birthdays anymore unless they are immediate family! Now, let’s compare this to my Aunt (in her late 60s) and my dad (in his 50s). Both of them got multiple calls from friends expressing their sentiments over my Uncle’s passing. Now, they definitely got a lot of responses on Facebook too…. But their close friends called. 

The difference here is clearly generational. My generation is one surrounded with social media. However, social media is a weird double edged sword. On one hand, it provides a way to find out more than you would ever want to know about people… and on the other hand, it distances people. Social media should “encourage” more social interaction, not discourage it. If I was to go into the hospital tomorrow, I think I would feel utterly alone. This is sad, but true. Of course my family would come and be around me, but I don’t know many friends I could call. I have maybe 2 female friends (one in Houston, and one in Florida) who I can say I would call. Other than that, I guess I would have to post something on Facebook. I still don’t think many people would even come. But this  holds true for me too.. I guess I would feel uncomfortable visiting someone in the hospital because I would feel like “maybe” I am not a “close” enough friend to elicit my presence.  Maybe this is just me, but how is it possible to have over 100 “friends” on Facebook, but have no one to call up on a rainy day and say “let’s go get coffee” or “let’s go to a movie”. Now, I know this is not the case for everyone. But, I think many people can relate to this. 

I was even thinking the other day (and I am sad to admit this)… but... what do friends do?” Isn’t that a weird thought? I was thinking, other than going for food or to a movie,... what do friends do? Well back before we put every ounce of our lives on Facebook for the world to see, friends used to hang out and talk about what was going on in their lives. But now, due to social media, I think many people feel like they already “keep up” with their friends. This is a positive thing… but I think we are still missing something. We are missing that face-to-face or even telephone piece. There is something different about hearing someone’s voice or seeing their face. We don’t seem to “live life together” anymore. But isn’t that what friends are for…to live life together?

So I propose a challenge. Let’s break this. Look through your phone or your email… or even your Facebook, and find 5 friends. These should be 5 friends that you don’t see or call regularly. These are friends that you consider to be “friends” not acquaintances… but they haven’t crossed that line to being someone who you could just call up when you are having a bad day (or vice versa). 

Then… do something completely bizarre….. CALL THEM! Do not email… that is cheating. Call them… and get together… go to the mall, sit down for coffee, just invite them over to hang out. Let’s go all old-fashioned/low-tech. Connect with them. 

Now, for my Christian friends reading this… this does NOT mean you have to have a spiritual/accountability session. Sometimes I feel like Christians (women especially) feel the need to ALWAYS discuss the Bible, their walk with Christ, their prayer life, etc when with other Christian women. This is NOT a bad thing. We need this as Christian women... DEFINITELY! But, sometimes we are missing the “living life together” part of being “friends”. Have fun together, and don’t be so serious! 

Ok… If you are up for the challenge and you plan to do it (I hope you do!)... keep yourself accountable. Write just a simple comment below… saying “I’m In” … Lets do this!